Almost a year ago Dr. Rob Ring became Autism Speaks new Chief Scientific Officer. I was told that this would be a new era at AS science. Dr. Ring would be introducing more innovative, original research, reducing the amount of learn the signs studies and prioritizing underserved, severely affected people, biomedical interventions and meaningful here and now treatment for all. Sounds good right?

Well first the good news. AS funded an excellent $120,000 study on wandering prevention and another really terrific study on vocational training for young ASD adults. Earlier this year, thanks the very dedicated work of an AS board member, AS also funded a highly innovative study on $100,000 study on PANDAS. .

I allowed the entire year of 2013 to pass without any public comment because I wanted to give Dr. Ring the opportunity to follow through with his proposed reforms. However, we are now eight months into Dr. Ring’s tenure, looking at the most recent slate of grants, the third grant cycle under Dr. Ring’s authority. These grants are largely disappointing and so painfully conservative in nature that I cannot remain silent. I have tried, very hard, behind the scenes, for years, to lobby for better research. No one at AS science is listening. Our ASD children and young adults deserve so much better.

In 2013 virtually ALL the Weatherstone Predoctoral Fellowships were either genetic, early intervention or brain imaging in nature. It is my understanding that Weatherstone was intended to draw innovative young investigators into the field of autism, with special emphasis on the GAP areas in ASD research. AS has saturated the field early intervention and learn the signs research with money. There is absolutely no need to continue to subsidize growth in this area. To a large degree the same problem applies towards the fields of genetics and brain imaging.

Imagine if the NIH were to subsidize more research into the dangers of smoking cigarettes, which is what is happening here.

There are already 1,295 studies on autism and brain imaging/ fMRI and at least 1,000 more in the pipeline. Simons, Cold Springs Harbor and the NIH are MORE than happy to fund this area of research, AS needs to move on. Brain imaging is all about looking at brain inflammation, we need to know what environmental triggers are CAUSING this to happen. There are over 5,000 published studies on autism and genetics. Naturally some genetics research is indeed valuable but why are most AS grants still genetic in nature? Dr Ring knows this is NOT what AS families want. There are 11,000 published studies on the signs of autism. That is e-n-o-u-g-h; there are over 6,000 studies on early intervention. Additionally there are p-l-e-n-t-y of geneticists and brain imagers in the field or autism research. Weatherstone should be subsidizing predoctoral students in the biomedical and environmental sciences fields, neglected by AS and the NIH. Weatherstone could also be supporting researchers to study the biological functions of autism via GI, autoimmune and food allergies. How refreshing that would be!

These consortiums appear to be a Two MILLION DOLLAR check to geneticists towards mystery drug development. Typically these studies research “core issues” (behavioral aspects- not total body autism) of autism. We cannot afford to go down the same avenues over and over again. We already tried this. AS spent 5 MILLION DOLLARS on the Fragile X /Seaside Therapeutics drug. The drug certainly helped those with Fragile X but not that the other 95% of people with autism. These rare chromosomal disorders are such a different animal; they do not translate to typical autism. Dr. Crawley mainly does genetic and behavioral research.

2) Preclinical Autism Consortium for Therapeutics (TX) $615,000

Dr. Paylor, the fundee is a genetics researcher and specializes in, you guessed it, Fragile X. There are 837 published studies on autism and Fragile X and probably 500 more in the pipeline.

3) Preclinical Autism Consortium for Therapeutics (MA) $600,000

Dr. Sahin is a genetics researcher and specializes in, naturally, Retts Syndrome and Tuberous Sclerosis research. FYI there are a total 1,070 published studies on autism / TS and Retts.

The idea that these 2 million dollar (and that is just phase 1!) genetics consortiums will lead to the creation of AS drugs is a great idea in theory, but in practice this project is a huge luxury we cannot afford. Hasn’t the Alzehimers community spent billions doing this, with no success? Too many people with ASD are suffering terribly today and we cannot and should not ask them to wait a dozen years for potential treatment drug when we have so many unstudied autism treatment options are ready to be researched right NOW.

AS could be testing the dozen or so drugs/ medicines currently in off label use in the ASD community right now! Do a clinical study into Pentasa an anti-inflammatory for GI disease- today! Do a TSO study on people with severe GI problems- today! Do a decent dietary intervention diet research towards the reduction of hyperactivity, project today! Do an IVIG project on severely immunocomprised ASD people- today! Do a TMS study on those with HF autism now!

4) Which placement for which child in urban early intervention? $447,000

Ok, I think we all know the answer to this one: the best available early intervention. There is no mystery here. The problem is $ and resources. There are 6,000 studies on the importance of early intervention. Children in urban areas need the same early intervention as children elsewhere. There is not an “urban autism.” Urban ASD children are indeed an underserved but the problem is political will and resources, not a lack of early intervention research.

5) Risk Evaluations for Latinos 300,000

On the face of this grant looks good but the fundee is: Dr. Eric Fombonne. OK, my immediate thought is, again: “Is AS science out of their mind?” In the not too distant past, Fombonne was charged with unethically acquiring AGRE parent data for an unauthorized study. Yet, Fombonne is rewarded with a huge $300,000 research project? Dr. Fombonne has long been on the record that there is no autism epidemic, no real rise at all. Additionally, Fombonne testifies, for money, against disabled children in vaccine court. What a guy, right?

Also it is it just me or is it absurd to fund a French Canadian to do research on American Latino issues. Listen, I am a dumb monolingual American. I do not speak 2 languages, but Fombonne speaks heavily affected English. Americans struggle to understand him. How on earth can he relate to Americans of Latino origin and how will THEY understand him. Come on, there is not 1 Latino American researcher who could do this work? This seems ridiculous on so many levels.

6) The Endless Learn the Signs Early Intervention Research of 2013

Social Attribution for Toddlers at Risk, Parent- Child Interactions, MRIs of Pivotal Response Training (this is like the 5th AS Pivotal Response study (yes it is all behavioral), Social Rewards in Autism (dozens upon dozens of these funded)

I don’t know about you, but I have really had enough of this.

7) And finally Eye Gazing. This is inexcusable in 2013. There are already over 610 published studies on autism and eye gazing. E-n-o-u-g-h. We know a lack of eye contact is a risk factor for autism. We have known that in fact for 15 years. This has to stop and the fact that Dr. Ring funded yet another eye gazing study yesterday is embarrassing to Autism Speaks.

Guess how many studies there are on actual research priorities of ASD families?

1) Autism and GI disorders/ disease: 283 studies

GI problems something that affect almost 50% of people with ASD

2) Autism and Gastrointestinal Interventions: 2 studies

2) Regressive Autism 87 studies

This affects almost 40% of kids with autism. Isn’t anyone curious why toddlers are abruptly going mute and (in my son’s case), no longer recognizing family members and suddenly screaming all day and night?

3) Adverse Vaccine Reactions and Autism 27 studies

This happened to my child, countless now ASD children and continues to happen every %^&day. How about we actually study these kids, not just Fragile X kids?

4) Autism and Autoimmune Interventions 71 studies

There are so many sick ASD people to settle for this shameful number

5) Autism and Food Allergies 51 studies

6) PANDAS and autism 4 studies

7) Brain Inflammation and Autism 87 studies

8) IVIG and Autism 18 studies

This absolutely saved my son’s health and is desperately needed for 100s of 1,000s of suffering and sick people with autism

7) Autism and Yeast/ Fungal Infections 31 studies. Yeast overgrowth is horribly common among ASD people. It is one of the major causes of night wakefulness AS just sponsored a sleep study on the circadian rhythms of sibs. That is just silly and wasteful. We need real solutions, not nonsense research on sibs.

There were two “environmental” grants funded in the recent cycle. One is a conference about “Communicating risk factors to the public.” Please, totally absurd, a conference about how doctors should talk to families is not environmental research. We need meaningful research about actual environmental risk factors before holding a communications conference. The second “environmental” grant is for the development of an environmental research tool. It is OK, but let’s be serious this is really not the kind of environmental research AS families have been promised. Such disappointing grants.

In Part 2, I would like to discuss suggestions for reform. What researchers would you like to see AS fund? What AS research have you liked? Am I missing something about the “Autism Consortiums?” What kind of AS treatment projects would most benefit the majority of people suffering with ASD? Are you an AS parent, if so what do you think of the recent slate of funded research? What type of environmental research would you like to see funded?

Comments

You can follow this conversation by subscribing to the comment feed for this post.

I know this was posted almost a month ago and I hope my comment is not too late but I would like to see some research in the gut motility area and stomach. My son was the first ASD kid to have his motility tested and we were surprised to find that his motility was superfast. As a matter of fact, after my son swallowed the nuclear pill, he was put in the scanner and they told me that will start tracking the pill in his stomach. They never did find it in his stomach, it had already gone through the stomach. Please keep in mind that my son suffers from chronic constipation and I took him off all of his stool softeners 4 days before the test. I asked the doctor about other patients about 6 months later and he found the same thing - super fast motility. I would love to have investigations for the stomach and also confirm that ASD kids have super fast motility.

Scientists re industry and research. At about the 38 minute mark in The Truth about Cell Phone Radiation - Dr. Devra Davis (couldn't make out one word or phrase marked with brackets):

Dr. Davis: ... If somebody comes to me, when I was a professor of epidemiology and directing a center, at a cancer institute, and said I want to give you 2 million dollars to do a study on X, I'd say thank you, and then I wouldn't necessarily have gone into detail and realized that they're setting me up to do something that's going to be of no real use and will help the industry to be able to say, well, we're supporting research but in fact, [to the audience] you be aware of this, calling for research has been an excuse, more often than not.

Dr. Martin Blank: It's a delaying tactic

Dr. Davis: And I document this in my book, 27 million dollars was spent on a [ ? ] program of research that produced very little except creating the impression that we could wait for new findings and we can't wait, I think that's the whole point.

Christina,
So seizures are associated with a compromised blood/brain barrier when neuroinflamation is present. I wonder if we could borrow from the concussion/football line of research to learn more about the association. Researchers have identified a protein (S100B which should only exist in the brain) that is elevated in the blood of some football players after hard knocks to the head even if a concussion is not sustained. Some were hoping to develop a quick blood test to determine if a player should be allowed to return to play after a non-concussive knock to the head. I wonder if that protein is elevated before vaccination in kids who go on to develop seizures after vaccination. Or maybe it's elevated in children who go on to develop autism after vaccination. I can see a study where we test blood in a vaccinating population of kids for the S100B protein immediately before vaccination. Would the rates of seizures shortly after vaccination be higher in kids who had elevated levels of S100B? Who knows, but I understand that the test for S100B is not terribly expensive, so it's a plausible study. There may even be a finger-stick blood test soon. An interesting idea anyway.

Some statistics: wish I had saved the sources: One in 25 kids (6 mos. to 5 years in age) will have at least one febrile seizure, and 32% of those will have more (75% within a year). A few of those 1 in 25 (3-5% of the 4%) will go on to develop epilepsy--as will 22-30% of kids on the autism spectrum . Autism is associated with epilepsy at a rate of 10-30%. The rate of seizures in autistic persons is ten times higher than in the general population.

2.5% of reported seizures followed vaccination in the first year of life. Other risk factors for febrile seizure: developmental delay, discharge from neonatal care after 28 days, day care attendance, viral infection, family history of febrile seizures, certain vaccinations, possibly iron or zinc deficiency.

Fortunately for our kids, there is research happening in areas autism parents care about like this excellent study on oxidative stress, mitochondrial dysfunction and autism by Dr. Richard Frye. Please read and share.

LITTLE ROCK, AR (Jan. 9, 2014) – The number of children diagnosed with autism spectrum disorder (ASD) is alarmingly high and appears to be continuing to rise. The Centers for Disease Control’s Autism and Developmental Disabilities Monitoring Network estimates that about 1 in 88 children has been identified with an ASD. Despite decades of research the cause of autism is not clear.

A new study published by Shannon Rose, PhD, postdoctoral fellow, and colleagues from the Arkansas Children's Hospital Research Institute (ACHRI) in PLOS ONE, an international, peer-reviewed, open-access online publication, may provide a clue into the cause of autism in some children on the autism spectrum. The study is titled, “Oxidative Stress Induces Mitochondrial Dysfunction in a Subset of Autism Lymphoblastoid Cell Lines in a Well-Matched Case Control Cohort”

Dr. Rose and ACHRI colleagues examined the “powerhouse” of the cell known as the mitochondria. They found that this powerhouse is very sensitive to toxic molecules known as reactive oxygen species in immune cells derived from about one-third of children with autism. When the researchers challenged these sensitive cells with the toxic molecules, their powerhouse, the mitochondria, started to shut down prematurely.

Since these types of toxic molecules can be produced by environmental toxins that have been linked to autism, these researcher hypothesize the mitochondria in a subset of patients with autism could be easily damaged.

This research also explains why obvious genetic abnormalities do not account for the majority of autism cases. Indeed, this research suggests that both genetic and environmental factors combine to result in the development of autism.

In this study, the researchers studied immune cells derived from 25 boys with autism and 25 typically developing boys matched on age. They then systematically increased the level of reactive oxygen species during which they measured the ability of the cells to produce energy and, most importantly, their energy reserves.

Previous studies have suggested that once the energy reserves are depleted in the cell, the cell starts to become non-functional and dies. They discovered that the mitochondria in immune cells from a significant subset - greater than 32 percent - of the children with autism lose their energy reserves when challenged with reactive oxygen species. Reactive oxygen species can be created by immune activation and environmental toxins – two factors that have been closely linked to autism.
The investigators specifically examined mitochondrial reserve capacity, which according to Dr. Rose, “is a measure of the ability of the cell to make more energy in response to a physiological stressor. When cells are stressed by things such as exposures to environmental toxins or by activation of the immune system, they need more energy to survive the harmful conditions created by the stressor.” Compared to cells from unaffected control children, the reserve capacity in immune cells from 32 percent of the children with autism was quickly depleted when the cells were challenged with physiological stress.

According to Richard Frye, MD, PhD, director of autism research at ACHRI, associate professor of Pediatrics at the University of Arkansas for Medical Sciences (UAMS) and second author on the study, “This study not only provides significant understanding into the possible cause of autism in some children but provides insight into potential treatments for children with autism and helps us understand what can be done to protect children during infancy to prevent them from developing autism.”

The research was supported in part by the Jane Botsford Johnson Foundation and the Arkansas Biosciences Institute, the major research component of the Tobacco Settlement Processed Act of 2000.

Arkansas Children’s Hospital is the only pediatric medical center in Arkansas and one of the largest in the United States serving children from birth to age 21. Over the past century, ACH has grown to span 29 city blocks and house 370 beds, a staff of approximately 500 physicians, 80 residents in pediatrics and pediatric specialties and more than 4,000 employees. The private, nonprofit healthcare facility boasts an internationally renowned reputation for medical breakthroughs and intensive treatments, unique surgical procedures and forward-thinking medical research - all dedicated to fulfilling our mission of enhancing, sustaining and restoring children's health and development. For more information, visit www.archildrens.org.

ACHRI provides a research environment on the ACH campus to meet the needs of the UAMS faculty. Research scientists at ACHRI conduct clinical, basic science, and health services research for the purpose of treating illnesses, preventing disease and improving the health of children everywhere.
UAMS is the state’s only comprehensive academic health center, with colleges of Medicine, Nursing, Pharmacy, Health Professions and Public Health; a graduate school; a hospital; a statewide network of regional centers; and seven institutes: the Winthrop P. Rockefeller Cancer Institute, the Jackson T. Stephens Spine & Neurosciences Institute, the Myeloma Institute for Research and Therapy, the Harvey & Bernice Jones Eye Institute, the Psychiatric Research Institute, the Donald W. Reynolds Institute on Aging and the Translational Research Institute. It is the only adult Level 1 trauma center in the state. UAMS has more than 2,865 students and 785 medical residents. It is the state’s largest public employer with more than 10,000 employees, including about 1,000 physicians and other professionals who provide care to patients at UAMS, Arkansas Children’s Hospital, the VA Medical Center and UAMS regional centers throughout the state. Visit www.uams.edu or www.uamshealth.com.

Victor:
I have a friend who had a sister taking rheumatoid arthritis medicine called methotrexate. She started to smell like fish - that was her body odor.
The smell is the result of choline deficiency messing up that part of the metabolism. She developed liver cancer.

This is no small thing what you mentioned and I had no idea that seizure medicines could cause this too. Since my son will be on seizure medicine for the rest of his life - your blog worried me a lot.

One of the most under researched areas of autism is in studying autistic adults who have medical and behavioral issues. The high cost of treating autistic adults with medical and behavioral issues should be of utmost concern for all involved. One overlooked issues is in studying severely autistic adults who, after years of taking seizure medications, have "blunted choline." The focus, therefore, should be on how to elevate choline in the brain of these autistic adults, as blunted choline is a medical issue that needs to be treated. Not one study has addressed this or proposed what medications would be indicated to help the autistic person regain the choline that is so desperately needed in their still developing brains. Note: Recent research shows that it is never too late to increase the brain health of the autistic adult, no matter how low functioning they appear. Moreover, studies have shown that the prior misconception that only autistic children benefit from ABA is now shown to be false. Adults with autism can also benefit from ABA therapy, with a complete medical and behavioral analysis to ensure their delicate needs are met.

Katie, thanks again. We all have ideas about research that should be done, and no one who responded here (yet) is claiming that autism is just a difference to be respected and not researched.

I read something by your mother (Suzanne Wright, Nov 11, 2013) that roused a lot of controversy and led to resignation of a self-advocate from AS. I agree completely with, and am grateful for what your mother said. For decades I was warned never to focus on my own difficulties and sense of despair as a parent. But would anyone dream of chastising parents of children with illnesses like cancer, cystic fibrosis, or polio for living “moment-to-moment... In despair. In fear of the future,” or feeling “depleted. Mentally. Physically. And especially emotionally”?

Carolyn Gammicchia, thank you for pointing out the GAO (General Accounting Office). I found their report on the IACC online. I have submitted comments for the IACC meeting Jan 14, but know these will be ignored as always. The GAO report is excellent; the IACC is a disgrace. How can the IACC put out a “strategic plan” for autism research that includes nothing on the language disorder and its neurological basis? I plan to send email to Marcia Crosse commending the GAO for their investigation and report.

When I heard that the University of Oklahoma Science Dept was conducting a research study (funded by AS)“Anti-Neuronal Autoantibodies in PANDAS and Autism Spectrum Disorders."I recieved an e-mail from Dr. Cunningham to volunteer for it, I decided not to b/c I do not trust AS. Also I am very uneasy about just who is looking at my childs' health info and what that may or may not do in regards to getting proper treatment or other for her down the road. I just do not trust anyone anymore!

Benedetta,
The book The Age of Autism had an interesting section on how Down's syndrome did not exist before the industrial pollution of the nineteenth century in England. I think the environmental factors clearly have the capacity to alter the genes responsible for this and many other conditions which appear to be solely genetic in origin.

Dear Katy,
I want to praise you for your continued brave advocacy for families who have autistic children. I was very disheartened to see a portion of this post dedicated to calling out research targeting Fragile-X. Many diseases have multiple causes and it would be a fallacy, if not selfish to say that a genetic cause is less important than a less well understood cause. For example research targeting the BRCA1 gene is most certainly just as valid as exploring environmental causes of breast cancer. I would also argue that families who participated in the Seaside drug trial that was cancelled feel just as slighted by research funding as you. In the future I do hope you would refrain from attempting to attack research that will help families with the Fragile-X genetic disorder and choose to support research into all causes of ASD.

Katie; I know that your parents and you gave birth along with blood, life, and breath to AS. I know this is your second heart break after your son. I am so sorry, that you have not reaped the fruits of your hard labor.

But what John Stone said -- pretty much tells us what happened. It was infiltrated by more than just outside interest but by those that had exactly opposite interests.

Maybe it was the way that AS was set up - it was done the same way so many other successful businesses/charities are set up because that is the way your father was taught how it should be done. That is the reason that AS became a success - a well know group. Well known and - I am so sorry --it really was doing nothing-- not even responding to simple questions about where are the nearest vocational training places for the disabled in a given area!!!! It's success does show that your parents have talent in the area and for that alone you should be proud.

It is time you and your family cut your heart strings to something you gave so much effort, blood, tears, and time to produce. Cut your loses and start another group, or offer your services to another group of righteously angry parents.

Katie; I can give you countless stories of things I have held on to; trying to make them work, and what they did was take my time and energy - till I passed a point that I had no more time or energy left, to chuck it; start something else.

It seems that the research community tasked with discovering what causes autism would rather do anything else - study cells, induce "autism" in mice and then study the poor mice, study services, communities, anything other than to study actual affected humans. That would entail having to interact with the people who have the answers and whose lives are being made more miserable by their dishonesty. For those receiving the funding, finding answers just wouldn't work. Success, unless it's coming up with a new pharmaceutical, isn't in their business model.

The only way that progress will be made is to rely on a completely independent group of real scientists.

I think it would help, Katie, if your parents publicly denounced and distanced themselves from AS, for the wrong direction that AS has taken, for its lack of results and for its conflicts of interest.

Nancy, you are right about EMFs and RFR. The invisible toxins are the most insidious. I worry about these just as much as vaccines, because they are so pervasive and increasing, few are paying attention, institutions, including and especially schools and universities are being paid to install technologies without questioning the safety, and there is great potential for irreparable harm. Here is a 16 second youtube from epidemiologist Devra Davis with a quick bit of advice: http://www.youtube.com/watch?v=iseqm2rKiQE
Also, Dr. Davis being interviewed: http://www.youtube.com/watch?v=NDe1iN5bV58
Please note The Real Truth About Health conference in NYC Jan 10-12th will be live streamed, see www.Therealtruthabouthealth.com. (The conference is announced on the youtube from Dr. Davis above.)

Hi Katie,
Thank you for your constant analysis of AS research. You are in a difficult position and I so appreciate you taking a stand. I was at the Summit in DC and I could see the strain on you. I support your advocacy for expanded research. Autism is so complex and individual we do need to go outside conventional wisdom so we can move forward with treatment across the spectrum. I need to put forward an ask for additional funding for research and programming for our "higher functioning" people. That term does more harm than good. Individuals deemed higher functioning are out in the world without skills to make safe decisions in so many circumstances. The resulting mental health challenges are epidemic and more and more are graduating to a basement with black plastic bags over the windows and video games. The increasing # of 21+ young adults who have nothing to do, can't get or hold a job, have no social network and no support for living arrangements should their parents die is a crisis yet all the funding for programs of support are cut. Our nation needs to look at our priorities. I am a parent and I run an organization that supports individuals with autism and their families and our public school. We need support to show there is more than ABA and more is needed to continue to teach these kids social and emotional understanding so when they are adults they can be more independent and SAFE and EMPLOYABLE! AS needs to offer larger grants that $20K for community groups so we can sustain a good program long enough to show others what works. Thank you Katie! Joanne Quinn

Absolutely, and I have written about this, notably in a letter to BMJ where I only made the error that 67% of screened for positive cases had pulled out before the Goyang study was concluded but that was only 2nd phase, 1st phase included it was 76%, but the discovery of so many alleged cases is presented as a wonderful success for the method - Geraldine Dawson is particularly gleeful at the prospect of so many cases. This was simultaneous with the arrival of Robert H Ring at AS as head of translational research (in 2011) heading a pre-competitive consortium of up to six giant pharmaceutical companies to develop psychotropic drugs for autism treatment. Obviously the screening projects are key to the commercial success of such a venture. Our children are to be pharmed, if they haven't been already. Likewise, if you actually identified environmental causes leading to less autism this would damage the commercial prospects for new "treatments".

Marcus is, of course, a very charming business ideologue who I'm told created a great business, but as we know sometimes healthy businesses create unhealthy people. And, of course, AS rather than taking the radical approach that everyone needed became crowded with people who were on-side with the government-pharmaceutical complex.

Very good point. A couple of years ago I highlighted a paper by a CDC scientist in which 6 in one hundred toddlers had routinely developed a temperate 39.5C or higher after MMR vaccine, but there was no follow up after a month. When I ran this troubling issue passed pharma/CDC apologist Dorit Reiss she responded:

"Fever as a side effect of MMR was known. Without reason to think it causes long term harm, why follow up?"

Brilliant. Unfortunately, we have lots of reasons to believe it causes long term harm. And after all why do any tests in the first place: obviously our researcher was going beyond due diligence?

Autism Speaks is the worst thing that has ever happened to the autism community. They do not want to find a cure for autism because more people with autism means more money for them. That is why they fund these studies which they know produce no results.

Research is an area very close to my heart. Life is extremely hard for my family right now. My son is doing poorly and I would so like research that could help him live up to his potential and free him from his extreme discomfort:
Biological causes of sensory problems and biological solutions
Subtypes,; solutions for those kids who do not respond to ABA; do different subgroups need different biomedical interventions?
Biological causes and solutions for regressive autism
We need more, more, more research done on probiotics that is not done by the companies that sell the probiotics. There is very exciting research being done in the area of probiotics right now and the researchers doing this work mention that it could be helpful for those with autism but the autism community is not participating in this research.
Research into dysbiosis in general -yeast, bacteria, parasites
More gut research
I am sad that so much money is being wasted. I wish you were the one making the research funding decisions for Autism Speaks, Katie. Then the world would be a much happier place for so many children.

Would really love to see a study that looks to see whether kids that have seizures or high fevers following MMR or DTP vaccination go on to have higher rates of autism than are found in the general population? ( But please ensure that the kids are followed to at least age 6 so there is actually time to get a diagnosis..)
There are no "ethical issues" for people to complain about with this one. Bet the results would be interesting though.

Katie - first thanks for always trying to keep tabs on AS and sharing with us. You have a unique insight and I can't imagine how difficult it is for you - being between a rock and a hard place - when dissing the organization your parents so lovingly established. We also gave up on AS; in 2007 when they told us they would not leave any of the $80,000+ our walk raised in our community. They'll never see another dime from our family. Personally, I'd love to see a study of older children who finally started talking and what helped them. And if someone would study some of our low-responders to bio-med who finally made progress and what finally helped them that would be great, too. Also, in-depth studies of the few wonderful places that have been established for adults on the spectrum followed up with step-by-step guidelines of how to do it. As more and more of our children grow older without recovering we desperately need to be trained in how to establish safe places for them when we are gone. And I'm all for a vax/un-vax study, but that will never happen from AS I know. Good luck with your push for reforms!

I agree that there are more than enough studies out there on Fragile X,early intervention,etc.Regressive autism,especially autism with multiple regressions,and autism with intellectual disability have been grossly under studied.The lack of studies on PANDAS/PANS is appalling.Same for yeast/fungus,and food allergies which have finally been explained to me so I can understand them.

With yeast,you are stepping on the toes of the soda/processed food industries,and if you think the drug companies are bad,you ain't seen nothin' until you go after McDonald's and Coca-Cola/

Dr.Frye,and Dr.James have both received funding grants from Autism Speaks.If I were on the board,or if I had a say in funding,and I were to be asked to name one thing Autism Speaks should fund,I would say this.

I would like to do a type of study that has never been done before.Anne Dachel is always asking where are all the older autistic adults who have all the medical problems that autistic kids do.The mito,the autoimmune,the methylation,and metabolic disorders.My case,and my history, proves these adults are out there,there just aren't as many of them,as there are children and young adults.

I would argue that this is because with adults thirty and older,the diagnosis usually stops at autism,while for children,this is only the beginning.Most older (30+)autistic adults have never been tested for any of these diseases,unless they are among the very few who have been lucky enough to see a DAN! or MAPS doctor,like I have.These diseases were not known to be associated with autism,when we were diagnosed.So they have never been tested.

I would like to see Autism Speaks fund studies to do a panel of diagnostic tests for these diseases found in autistic children on as many adults as possible known to have an autism diagnosis.Starting with a questionnaire to be filled out about medical histories.This would screen out the people who would have the testing in the first place.There also would be a big media campaign to make people aware of this testing.You would be surprised to learn how many people who have autism,also have these other diseases we all know about.

Autism Speaks, and their predecessor organizations have had 20 years to come up with some practical answers for the causes and treatments for autism -- and they have failed to do so in their research efforts. I think it only wise to see that their interest in such research is a function of tactical fundraising rather than finding strategic solutions. It seems by now, a sisyphean effort trying to convince AS to do the right things. Do we have another 20 years to wait for them to come around? The same conclusion can be made about the National Institutes of Health and their planned impotent IACC. Let's end the pleading, shaming and begging. Perhaps it would be more productive to support an different autism research entity with a mission towards practical results. If not the Autism Research Institute in San Diego, whom else? Let's go positive. - Lenny Schafer

This essay below reveals the mindet of some involved in genetics research..cleanse the gene pool. eliminate 90% of the autism cases. genocide.

"Dreaming of a brighter future"

For centuries people have tried to lower incidence of common hereditary disorders, at least for the generations to come. How could future be brighter and better, if according to Autism speaks the autism spectrum disorder already affects 1 in 88 newborns and continues to grow? The purpose of this project is to establish a framework of future social development in which incidence of complex and simple Mendelian disorders will be substantially lower than naturally occuring. Speaking in plain words, prevention of 90% of the Autism, 50% of diabetes type 1, 75% of diabetes type 2 and at least 60% of allergy cases could become a reality one day.

The project description

"Biomedical advances have led to a relaxation of natural selection in the human population in developed countries. In the absence of strong purifying selection, spontaneous and frequently deleterious mutations tend to accumulate in the human genome and gradually increase the genetic load; that is, the frequency of potentially lethal genes in the gene pool. It is not possible to assess directly the negative impact of the genetic load on modern society because it is influenced by many factors such as constantly changing environmental conditions and continuously improving medical care. However, gradual increase in incidence of many complex disorders suggests deleterious impact of the genetic load on human well being. Recent advances in in vitro fertilization (IVF) combined with artificial twinning and improved embryo cryoconservation offer the possibility of preventing significant accumulation of genetic load and reducing the incidence of hereditary disorders."

"Many complex diseases such as type 1 and 2 diabetes, autism, bipolar disorder, allergies, Alzheimer disease, and some cancers show significantly higher concordance in monozygotic (MZ) twins than in fraternal twins (dizygotic, DZ) or parent-child pairs, suggesting their etiology is strongly influenced by genetics. Preventing these diseases based on genetic data alone is frequently impossible due to the complex interplay between genetic and environmental factors. We hypothesize that the incidence of complex diseases could be significantly reduced in the future through a strategy based on time-separated twinning. This strategy involves the collection and fertilization of human oocytes followed by several rounds of artificial twinning.
If preimplantation genetic screening (PGS) reports no aneuploidy or known Mendelian disorders, one of the MZ siblings would be implanted and the remaining embryos cryoconserved. Once the health of the adult MZ sibling(s) is established, subsequent parenthood with the cryoconserved twins could substantially lower the incidence of hereditary disorders with Mendelian or complex etiology.

The proposed method of artificial twinning has the potential to alleviate suffering and reduce the negative social impact induced by dysgenic effects associated with known and unknown genetic factors. Time-separated twinning has the capacity to prevent further accumulation of the genetic load and to provide source of isogenic embryonic stem cells for future regenerative therapies. "

Autism Speaks "science" is somewhat like spending 10 or 15 years looking for the "Polio gene" and trying to figure out why one sibling got polio and the other did not... all while Polio is running totally out of control.

American parents are expected to walk in circles, carry Autism Speaks balloons and send in the funds for more redundant research... The next year the direction of the circle is reversed to keep it interesting.

For those who are new to the group Katie, you need to provide a brief vaccine history of Christian.

Thanks for the synopsis- to be honest I gave up on AS a long time ago. My suggestions for projects to fund include:
1. sub-groups- this important step has been totally skipped. For example, the studies about dietary interventions and GI issues would be best carried out on ASD children who actually *have* GI symptoms/issues. My ASD son is a rarity in that he does not have GI symptoms- why study diet on someone like him? This is just one example. There are subgroups in ASD, just like there are in every other disease but for some reason we are all lumped together. These subgroups would be based on biomarkers. I believe ARI is currently doing a study on subgroups- perhaps AS could mail them a check?
2. Autoimmunity. This is huge. And vast. Why are ASD kids more susceptible to those viruses, bacteria, yeast, lyme, etc etc? Because their immune systems are seriously messed up. This would certainly include PANS, lyme, IVIG treatment....
3. Mitochondrial function and autism.
4. Some of the researchers I'd like to see AS fund would be Frye, Rossignol, Jill James, Van de Water- these researchers are totally mainstream and SAFE. It's absolutely INSANE that AS has not funded them previously. I'd love to see AS fund less mainstream sources, but baby steps- fund the safe ones- WHY haven't they??!!!
5. Now that Dawson is gone, why on earth are they continuing to fund UNC infant sibs studies (imaging). I lived 2 miles from UNC and let me tell you- that place SUCKS for autism. We had to move. My husband worked for UNC and their insurance wouldn't even pay for my son's 1x/week speech therapy, certainly not ABA or any therapies actually. Autism Speaks should punish this behavior. If the university is not offering good autism services then AS should not send them one dime of funding for research. I think that should be a policy.

at what point do we realize the genocide train is steaming ahead and these AS scientists are on board. Why do they ignore autism parents research interests? What purpose does all this investment in genetics research serve? To find treatments for our kids? no. More likely it's laying the groundwork for future DNA screening of embryos for hidden weaknesses and defects and genetic counseling for prospective parents. Autism genome project part of a grander scheme to cleanse the human gene pool and control human reproduction to encourage the most fit. This, I think, is the true agenda. They want to cull out those with "bad genes". AS science has been hijacked by these types. We are being scammed.

You would have been best served keeping your distance from Autism Speaks. They are in the business of autism and showed that with their push for legislation that focused on ABA and psychiatric interventions rather than looking at direct causation and treatment via viable medical options.

Families now have waited to long and should realize that AS never was the knight in shining armor. They are building their business entity on our backs and the lives of our children.

I'd ask that parents, including you Ms. Wright, take the time to write the IACC and the GAO. We now have a report from the GAO that indicates the IACC is not doing what they were funded to do, coordinate research to ensure the lack of duplication and translation to application. 1.4 billion dollars has been spent since the first CAA. Not much has become of that other than folks at the last meeting on Nov. 15th trying to come up with things that fell within the Strategic Plan of the IACC. Watch that meeting as well and you will see why the committee currently too is not representative of the autism community.

You all have until 5pm today, EST to submit a written comment for this January 15th meeting for the record. Please do so because the GAO report is the silver bullet we need to effect change in this area. Let's not let that go to waste.

This information will assist you and yes, the IACC is in non-compliance too of their mission. We need to at least acknowledge that.

1. Vaccine link
2. Gut issues and treatment
3 Yeast treatments
4. PANDAS treatment
5. Where the hell are our children going to live when we die????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????

Who will care for them? My son is 20 and has no where to go for recreation. No respite for aging parents. No financial means to get help to care for them in our own home.

Fombonne is a Frenchman who went to McGill and now UC Davis via the Institute of Psychiatry in London: everywhere the red carpets are rolled out. And everywhere he has been involved in fudging the data on the rise in autism. Not to mention the ghastly AS Goyang project where three quarters of the screened for positive cases withdrew before the results were published.

It would seem you are discouraging research in areas where the greatest probability and plausibility for causation and correlation exists for autism. What is your credible basis for this rationale? Likely the reason there are so few studies for your list of conjectured autism causes is those studies already conducted show little or no data to support the hypotheses. The old saying "Don't flog a dead horse" certainly applies.

Katie, we want a cure. Autism Speaks will never deliver one, and has no intentions of finding one,(I have proof) but they do have the ability to pay for one, and it's up to us to shame them into it. Last year I sent my old FDNY boots to Obama asking him for a National effort to find a cure for Autism. (guess they didn't fit and our community unworthy). But after reaching out to the X-Prize foundation found out that they care and were actively seeking partners for a prize to find a Cure for Autism, inspired I mentioned Autism Speaks as a perfect partner, my euphoria was dashed as they informed me that Autism Speaks turned them down.( have emails to prove it) I could not understand why, it's a win win set up 10 million dollar prize for a cure,( AS could put a measly million aside each year for it) first one to do it gets paid, patent, prestige, all kinds of awards including Nobel and we get our kids back. (Unlike Autism Speaks they have had success). Over simplified yes and a one shoe fits all not likely but any chance to cure a large portion of our community should be embraced, no? I feel all efforts and funds should go to finding a cure leave no stone unturned there is nothing elce to me. But Autism Speaks is only interested in itself and like a big baby does not want to share money, credit or do anything that may bring the gravy train to a hault. Autism Speaks is a despicable organization and has proven to me they don't want to find a cure for our no longer kids our young adults, and 10 years from now we will be saying our adult children with Autism and so on until we are dead and turning over in our graves as our beautiful children suffer without us. AS will be alive and well employing a new generation of self absorbed career obsessed(Bell) fat cats who could care less.
love always Katie keep fighting the good fight, Timothy P. Dwyer

I have also been disgusted by Austim Speaks' funding decisions as well as their running commentary on other research that always seems to be pro-pharma and pro-"it's genetic". The one exception that I have seen recently is the Caltech studies (I think it's a Weatherstone fellowship) about maternal immune activation. First they showed that a bone marrow transplant in the offspring of immune activated mouse mothers could relieve autism behaviors. Most recently they showed that a particular gut bug could alleviate leaky gut syndrome and autism behaviors as well. If we follow this line of research to a full understanding of cause and effect, I think we can't avoid finding causes (and not just maternal immune activation) that are absolutely not genetic. Even when they work hard to fund only things that maintain the status quo, some innovative line of research slips past them.

It's not really clear that the studies you mention ("Guess how many studies there are on actual research priorities of ASD families?") are studies that have already been done--and have absolutely NOTHING to do with AS. Readers might misunderstand and think that AS is currently funding or somehow already involved in those studies.

AS science division has put all its eggs in the genetics basket when clearly there are a host of other issues such as GI and brain inflammation, microbiome, microglia and mitochondrial dysfunction that research money should be invested in. They seem to have their own agenda as they certainly are not listening to the parents.

Just an FYI, but Fombonne is a French man (born and schooled in France) working in Canada. (I don't see anywhere that he has taken Canadian citizenship.) This is very different from being French Canadian.

With no disrespect to the Wrights, I always advise well meaning family and friends not to give to Autism Speaks but to give to local autism groups. We stopped giving to all the major disease charities because it is really hard to see any ground gained on understanding the causes of these diseases even after years and millions of dollars raised. The minute any of these drugs that YOU helped fund looks promising, the pharma companies take over and will sell them to you at ridiculous costs. Think about that.

Thanks so much, Katie. This will be a great resource for forwarding information to the media and politicians.
I would like to see the majority of research on:
1. Vaccines and autism
2. gut issues and the immune system.
3. PANDAS (which affects so many of our kids)
4. IVIG-which is not affordable to me and so many others.

The research on Fragile X syndrome ought to focus on those individuals who DO NOT have autism. What is different about those people? Why didn't they develop autism?

The answer is simple: They didn't suffer the environmental trigger that causes this particular version of brain damage.

This is what Eileen and Bob are really talking about. This is what is behind "Regressive Autism."

AS is funding a fleet of researchers looking for a disease gene for a disease that doesn't exist.

Yes, there are individuals with genetic predispositions. There are people who develop autism due to factors beyond vaccine injury. Study all the factors, not just the ones that keep the feds comfortable.

Focus on the people who suffered injuries leading to the development of regressive autism. The Division of Vaccine Injury Compensation knows about these people and continues to sit in silence.

The biggest part of this story; $2.7 million spent. Unless there are more grant cycles (& I hope there is) the largest autism research group just spent 5% of their revenue on research. Where does the rest go?

In 1952 The then UK Minister of Health Ian McCleod made a press announced about the link proved by Sir Richard Doll of smoking and lung cancer.In fact Richard Doll stopped the study halfway through because it was so apparent smoking was the major player in lung cancer.It still took an amazing amount of time for that information to be absorbed and it was 12 years later the Surgeon- General report. I think vaccines are to autism as smoking to lung cancer, lets hope some one with medical clout realises makes the same connection.

Katie, you're absolutely right that AS has warped spending priorities, and we're all very glad you counted up the thousands of pointless studies that fail to address the real issues. But doesn't AS have some guns pointed at its head? One is Alison Singer and her Autism Science Foundation, who is clearly suggesting that if AS dares to investigate vaccines, corporate funders should defund AS and give their money instead to her organization. Likewise, the CEO of the ARC recently launched a gratuitous attack on your mother, Suzanne, for saying that autism is a real crisis: he may also be angling to get some of the money that now goes to AS. Yes, AS has been bought -- and this is designed to insure that AS stays bought.

I would like to see an environmental history case study done on our kids. List all of the commonalities that we have with one another, and review the information. Vaccines (environmental triggers) will be right up there at the top. It will be hard for researchers and those in high places to ignore the truth then. Our kids deserve better. Autism Speaks should be investigating the truth--- look at the families-- the victims. Autism Speaks owes it to these kids and now some adults. It makes no difference if it puts all the investors in a 180 and Autism Speaks folds-- at least the truth will be out there. I am talking about truth in paper, court documents, no cover-ups..... just the facts--- from our families. History in textbooks that our children were dragged under the bus and left for dead.

Heath outcomes of vaccinated vs. unvaccinated populations or even populations who delay the current "every child by 2" mantra.

Research into alternative treatments like chlorine dioxide and medical marijuana in treating GI and behavior issues and seizures.

Also, it just pisses me off to no end that millions continue to be wasted on this worthless BS. AS would be better off issuing grants to actual service providers to help close the gap between the costs in providing effective and appropriate interventions and the funds available.

In 2003, Baskin et al published results on brain cell damage from cultured human brain cells exposed to Thimerosal in a laboratory environment. However the power of detection of brain cell damage was limited to around 1 % because of the natural brain cell deaths in the laboratory environment of the study.

The problem with this limitation of detection power is that with an estimated 100 billion brain cells in a human then 1 % of brain cell death represents one billion brain cell deaths. Another is that the FDA has not established a safe amount of brain cell death.

In regard to Thimerosal exposure deaths, in 2013 Age of Autism published “A Proposed Laboratory Neuron Toxicity Test Model for Thimerosal.” Equation one in that model predicts a cultured neuron % failure rate of 0.06 %.

So AS could conduct a laboratory study with a much greater power of detection of brain damage and apply that data to further improve the AoA published model. Or they could hire scientists with integrity to look at published data and spend their money to lobby congress for the end of all mercury in vaccines!

There was one on the Autism Speaks list that I was pleased to see, and that you didn't mention above: "Psychiatric crisis among youth and transition age adults with autism spectrum disorders". The overlap between serious mental illness and autism is a problem for only a minority of those with autism, but it can be a big problem when it occurs. It also is the #1 issue when we start reading the horror stories of violent actions by a very few people with ASD. The conventional psychiatric milieu doesn't work well for people with ASD, professionals in mental health generally don't have training in ASD, and the autism community has been reluctant to bridge the gap. I'm glad to see any autism organization recognize that this is an issue.

Katie, thank you for asking what research we parents would like to see. I will continue to point to research done decades ago that could have prevented the current autism epidemic.

Language disorder is the most debilitating aspect of autism. We all have been distracted by other problems. My son Conrad had a “collapsing trachea” that interfered with his breathing, especially during the night. Conrad had a traumatic birth, as did his brother who had severe developmental delay and was diagnosed with cerebral palsy at 20 months of age.

Conrad’s motor development was thankfully right on time. His language development appeared to be ahead of schedule. He was not quite 2 years old and could sing the 12 Days of Christmas without missing a stanza. We thought he was a little genius. I am sorry I did not promote his musical ability. I had too many concerns with his brother.

It was his nursery school teacher who suggested we have Conrad evaluated for autism. She pointed out that everything he said was a phrase recited from memory (like the 12 Days of Christmas), but he was not learning words and using them in normal baby-talk. She was right. Conrad’s speech was what is known as delayed-echolalia, and included pronoun-reversal, use of “you” instead of “I” to refer to himself.

I will continue to point out research from decades ago that provided evidence of damage to the auditory pathway caused by oxygen insufficiency at birth. This injury is compounded by bilirubin, and Conrad also suffered severe jaundice at birth.

If the research of William Windle on asphyxia at birth in monkeys is too old, then it should be repeated. The brains could now be investigated using MRI rather than having to kill the monkeys to look for neuropathology.

Asphyxia??? Back in the 1950s and 60s this was done by what is now routine obstetric practice, clamping the umbilical cord immediately at birth. Great efforts are made to resuscitate human infants who are not able to quickly begin breathing after amputation of the placenta. Even if the Apgar score is a perfect 10, blood may have been drained from the brain to jump-start the lungs.

I have much more to say. I have written much, and have 6 ebooks (on amazon and bn.com), plus my website at conradsimon.org. I clearly need to learn how to be heard. I tried corresponding with AS, but stopped after receiving no response. I will continue to try to participate in the conversation. Thank you again for asking for feedback.

Thanks for the insights, Katie. I stopped relying on AS for science research that would help our children now several years back and am pleased you stay in the pursuit of AS funding some helpful studies.

Real hope comes from those focused on functional and integrative medicine - root cause medicine. If AS wants to make real change, they need to make the paradigm shift from viewing Autism as psychiatric-behavioral to physiological. What if Wake Forest, who applied for a grant from AS was able to get funded on GI biomarkers? Simple and elegant.

Focus on GI, Immune, and neurological medicine. The medical needs of our children are paramount to their success, would reduce long term health costs, to enable at least 10% to recover and lead contributive lives. I don't know what to say other than - leadership takes courage and its time to be fearless on behalf of our children with regressive autism.

Health advocates are marking the 50th anniversary of the 1964 Surgeon General report on the health consequences of smoking .. that eventually led to a virtual "sea change in the country's attitude toward tobacco".

No other single report has had this large of an effect on public health, says Thomas Frieden, director of the Centers for Disease Control and Prevention.

When you stop and think about it .. Frieden is absolutely right .. that ONE report by the US Surgeon General .. FINALLY ended decades of denials and delays of the tobacco industry .. that had successfully prevented all "evidence of harm" of smoking from the only court that matters .. which is .. the "court of public opinion".

What Frieden is actually saying is .. don't wait for the CDC to do what must be done .. because .. the CDC will only respond if publicly embarrassed .. by SOMEONE with the gravitas of the US Surgeon General Office .. to FINALLY put the decades of delays and denials regarding the "cause of autism" behind us.